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Too many people are struggling with their diagnosis alone because of fear of what people might think, say or do

Nicola Moore

More than a third of Parkinson’s patients hide symptoms “out of fear or shame”

Special reports

Author: Parkinson's Life editorsPublished: 18 April 2016

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Many people with Parkinson’s are too afraid to reveal their diagnosis – and it’s having adevastating impact on their emotional health, say campaigners

Almost 40% of people with Parkinson’s disease feel the need to hide their symptoms or lie about having the condition, according to a survey by a leading Parkinson’s charity.

The research suggests those who try to hide their condition believe the symptoms are not socially acceptable and that people may feel awkward or embarrassed around them.

Released to mark the start of Parkinson’s Awareness Week, the Parkinson’s UK survey reveals an alarming level of fear around sharing a diagnosis. This stigma is denying people vital support at a time when many struggle emotionally to come to terms with their condition.

The disease affects 127,000 people in the UK – about one in 500 of the population. Based on the survey’s findings, the charity estimates that 47,000 people in the country have hidden their symptoms.

Three reasons people hide their symptoms:

not wanting others to be embarrassed (63%)

fear of being judged (34%)

symptoms not socially acceptable (32%)

In many cases, people had even delayed telling their loved ones about their diagnosis, for fear of being stigmatised or ‘looking weak’ (40%). Other factors include ‘not knowing how to bring it up’ (36%), being ‘unable to find the words’ (28%), or simply remaining in denial about their diagnosis (33%).

Emotional impact

The charity expressed concern over the emotional impact that people faced after diagnosis.

Steve Ford, chief executive at Parkinson’s UK, said: “It’s worrying that many people with Parkinson’s, for a wide range of reasons, are not able to access the help they need – and it’s having a devastating impact on their emotional health.

Nicola Moore, Northern Ireland Country Director at Parkinson’s UK, said: “No-one should feel alone in dealing with a diagnosis of Parkinson’s. Too many people are struggling with their diagnosis alone because of fear of what people might think, say or do.

More than a third (37%) of those surveyed experienced negative emotions in the year following their diagnosis, with the news having the biggest emotional impact on younger people with Parkinson’s.

Many people reported feeling ‘like their world had ended’ (18%), ‘like they were grieving’ (14%) or ‘like they didn’t know who to turn to’ (13%).

Elisa Rovelli, 29, who has lived with Parkinson’s since she was 10 but wasn’t diagnosed until she was 19, told Parkinson’s Life about the stigma she experienced: “I understood the deficiency that made me different was outside of my control. I was living between my family who couldn’t help me and the pain of being different and not accepted by society.

Elisa Rovelli has lived with Parkinson’s since she was 10

“My parents couldn’t be my role models because I was different to them – I’ve never had any guidance, nor anyone I could look up to. I felt like I was alone with the condition.”

The survey also found that people who have shared their diagnosis with their immediate family reported feeling ‘able to accept they had Parkinson’s’ (45%), while more than a quarter reported feeling relieved (27%), and 15% say they felt glad they didn’t have to hide their symptoms anymore.

“We are determined that each and every person with Parkinson’s is aware of the support available so they can feel equipped to have these difficult conversations,” added Ford.

“We know that the right support, whether through family, friends or Parkinson’s UK, is vital for those with the condition, to help them come to terms with their diagnosis and know that they’re not alone.

IN THE NEWS

Carefully selected news stories from the international Parkinson's community.

3 weeks ago

Excess calcium in brain could cause Parkinson’s

Researchers at the University of Cambridge, UK, have discovered that excess levels of calcium in brain cells may lead to the formation of the toxic clusters that signify Parkinson’s disease. The findings, reported in the journal ‘Nature Communications’, show that calcium can influence the interaction between small membranous structures inside nerve endings, which are important for neuronal signaling in the brain, and alpha-synuclein – the protein associated with Parkinson’s disease. Dr Janin Lautenschläger, the paper’s first author, said: “This is the first time we’ve seen that calcium influences the way alpha-synuclein interacts with synaptic vesicles. We think that alpha-synuclein is almost like a calcium sensor. In the presence of calcium, it changes its structure and how it interacts with its environment, which is likely very important for its normal function.”

Jewish people with Crohn’s disease more likely to carry LRRK2 gene mutation

A scientific study has concluded that there may be a link between Parkinson’s and Crohn’s disease within the Ashkenazi Jewish community. The study’s findings, which were published in the journal ‘Science Translational Medicine’, has found that members of the population with Crohn’s disease are more likely to carry the LRRK2 mutation which is a significant cause of Parkinson’s. Lead researcher Dr Inga Peter, professor of genetics and genomic sciences at the Icahn School of Medicine, New York, US, said: “Crohn’s disease is a complex disorder with multiple genes and environmental factors involved, which disproportionately affects individuals of Ashkenazi Jewish ancestry. “The presence of shared LRRK2 mutations in patients with Crohn’s disease and Parkinson’s disease provides refined insight into disease mechanisms and may have major implications for the treatment of these two seemingly unrelated diseases.”

Could caffeine in the blood help diagnose Parkinson’s?

Blood caffeine levels could be promising diagnostic biomarkers for early-stage Parkinson’s, Japanese researchers reported in the journal ‘Neurology’ earlier this month. The study found that people with Parkinson’s had lower levels of caffeine and caffeine metabolites in their blood than people without the disease, at the same consumption rate. Caffeine concentrations also were decreased in Parkinson’s patients with motor fluctuations than in those without Parkinson’s. However, patients in more severe disease stages did not have lower caffeine levels. The study’s authors, Dr David Munoz, University of Toronto, and Dr Shinsuke Fujioka, Fukuoka University, suggested that the “decrease in caffeine metabolites occurs from the earliest stages of Parkinson’s.” They added: “If a future study were to demonstrate similar decreases in caffeine in untreated patients with Parkinson’s […] the implications of the current study would take enormous importance.”